A Structured Approach to Capture the Lived Experience of Spinal Cord Injury: Data Model and Questionnaire of the International Spinal Cord Injury Community Survey

American Journal of Physical Medicine and Rehabilitation

Volumn 96, Issue 2, 2017, Pages S5-S16

  Fekete, Christine ^a   Post, Marcel W M ^a,b,c   Bickenbach, Jerome ^a,d,e   Middleton, James ^f   Prodinger, Birgit ^a,d,e   Selb, Melissa ^a,e   Stucki, Gerold ^a,d,e  

^a SWISS PARAPLEGIC RESEARCH   (Switzerland)

^b UNIVERSITY MEDICAL CENTER GRONINGEN   (Netherlands)

^c UNIVERSITY MEDICAL CENTER UTRECHT   (Netherlands)

^d UNIVERSITY OF LUCERNE   (Switzerland)

^e Guido A Zäch Institute   (Switzerland)

^f UNIVERSITY OF SYDNEY   (Australia)

Author keywords

Community Survey; Data Collection; Disability and Health; International Classification of Functioning; Questionnaire Design; Spinal Cord Injury; Survey Methodology

Indexed keywords

CLASSIFICATION; DAILY LIFE ACTIVITY; DEVICES; DISABILITY; DISABLED PERSON; EVALUATION STUDY; HEALTH SURVEY; HUMAN; INTERNATIONAL CLASSIFICATION OF FUNCTIONING, DISABILITY AND HEALTH; OBSERVER VARIATION; QUESTIONNAIRE; REPRODUCIBILITY; SPINAL CORD INJURIES;

ACTIVITIES OF DAILY LIVING; DISABILITY EVALUATION; DISABLED PERSONS; HEALTH SURVEYS; HUMANS; INTERNATIONAL CLASSIFICATION OF FUNCTIONING, DISABILITY AND HEALTH; OBSERVER VARIATION; REPRODUCIBILITY OF RESULTS; SPINAL CORD INJURIES; SURVEYS AND QUESTIONNAIRES;

EID: 85010014496     PISSN: 08949115     EISSN: 15377385     Source Type: Journal    
DOI: 10.1097/PHM.0000000000000622     Document Type: Article

References (58)

1. World Health Organization: Draft WHO Global Disability Action Plan 2014-2021: Better Health For All People With Disability. Geneva,WHO, 2014
2. World Health Organization: International Classification of Functioning, Disability and Health: ICF. Geneva,WHO, 2001
3. Cieza A, Boldt C, Ballert CS, et al: Setting up a cohort study on functioning: deciding what to measure. Am J Phys Med Rehabil 2011;90:S17-28
4. Fekete C, Boldt C, PostM, et al: How to measure what matters: development and application of guiding principles to select measurement instruments in an epidemiologic study on functioning. Am J Phys Med Rehabil 2011;90:S29-38
5. Cieza A, Kirchberger I, Biering-Sørensen F, et al: ICF Core Sets for individuals with spinal cord injury in the long-term context. Spinal Cord 2010;48:305-12
6. Kirchberger I, Cieza A, Biering-Sorensen F, et al: ICF Core Sets for individuals with spinal cord injury in the early post-acute context. Spinal Cord 2010;48:297-304
7. Selb M, Escorpizo R, Kostanjsek N, et al: A guide on how to develop an International Classification of Functioning, Disability and Health Core Set. Eur J Phys Rehabil Med 2015;51:105-17
8. Prodinger B, Cieza A, Oberhauser C, et al: Toward the International Classification of Functioning, Disability and Health (ICF) Rehabilitation Set: a minimal generic set of domains for rehabilitation as a health strategy. Arch Phys Med Rehabil 2016:875-84
9. Cieza A, Oberhauser C, Bickenbach J, et al: Towards a minimal generic set of domains of functioning and health. BMC Public Health 2014;14:218
10. Geyh S, Müller R, Peter C, et al: Capturing the psychologic-personal perspective in spinal cord injury. Am J Phys Med Rehabil 2011;90:S79-96
11. Gross-HemmiMH, PostMWM, Ehrmann C, et al: Study protocol of the International Spinal Cord Injury (InSCI) community survey. Am J Phys Med Rehabil 2017;96(Suppl):S23-34
12. Cieza A, Brockow T, Ewert T, et al: Linking health-status measurements to the international classification of functioning, disability and health. J Rehabil Med 2002;34:205-10
13. Cieza A, Geyh S, Chatterji S, et al: ICF linking rules: an update based on lessons learned. J Rehabil Med 2005;37:212-8
14. Cieza A, Fayed N, Bickenbach J, et al: Refinements of the ICF Linking Rules to strengthen their potential for establishing comparability of health information. Disabil Rehabil 2016;17:1-10 [Epub ahead of print]
15. Edwards PJ, Roberts I, ClarkeMJ, et al: Methods to increase response to postal and electronic questionnaires. Cochrane Database Syst Rev 2009;3:MR000008
16. Jepson C, Asch DA, Hershey JC, et al: In a mailed physician survey, questionnaire length had a threshold effect on response rate. J Clin Epidemiol 2005;58:103-5
17. Boers M, Brooks P, Strand CV, et al: The OMERACT filter for Outcome Measures in Rheumatology. J Rheumatol 1998;25:198-9
18. Fitzpatrick R, Davey C, BuxtonMJ, et al: Evaluating patient-based outcome measures for use in clinical trials. Health Technol Assess 1998;2:1-74
19. Furr M, Bacharach V: Psychometrics: an introduction, Thousand Oaks, Sage Publications, 2008
20. Harkness J, Bloom A: European Social Surey: Round 3 ESS Translation Guidelines, ZUMA, Mannheim, 2006
21. Beaton DE, Bombardier C, Guillemin F, et al: Guidelines for the Process of cross-cultural adaptation of self-report measures. Spine 2000;25:3186-91
22. Epstein J, Osborne RH, Elsworth GR, et al: Cross-cultural adaptation of the Health Education Impact Questionnaire: experimental study showed expert committee, not back-translation, added value. J Clin Epidemiol 2015;68:360-9
23. Ware JE Jr, Sherbourne CD: The MOS 36-item short-form health survey (SF-36). I. Conceptual framework and item selection. Med Care 1992;30:473-83
24. Garratt AM, Ruta DA, Abdalla MI, et al: The SF36 health survey questionnaire: an outcome measure suitable for routine use within the NHS? BMJ 1993;306:1440-4
25. Ware JE Jr, Kosinski M, Bayliss MS, et al: Comparison of methods for the scoring and statistical analysis of SF-36 health profile and summary measures: summary of results from the Medical Outcomes Study. Med Care 1995;33:AS264-79
26. Ware JE, Kosinski M, Dewey JE: How to Score Version Two ot the SF-36 Health Survey. Lincoln, RI, Quality Metric, Incorporated, 2000
27. Brinkhof MW, Fekete C, Chamberlain JD, et al: Swiss national community survey on functioning after spinal cord injury: protocol, characteristics of participants and determinants of non-response. J Rehabil Med 2016;48:120-30
28. Cleeland CS, Ryan KM: Pain assessment: global use of the Brief Pain Inventory. Ann Acad Med Singapore 1994;23:129-38
29. Kalpakjian CZ, Scelza WM, Forchheimer MB, et al: Preliminary reliability and validity of a Spinal Cord Injury Secondary Conditions Scale. J Spinal CordMed 2007;30:131-9
30. Sangha O, Stucki G, Liang MH, et al: The Self-Administered Comorbidity Questionnaire: a new method to assess comorbidity for clinical and health services research. Arthritis Rheum 2003;49:156-63
31. Fekete C, Eriks-Hoogland I,BaumbergerM, et al: Development and validation of a self-report version of the Spinal Cord Independence Measure (SCIM III). Spinal Cord 2013;51:40-7
32. Sabariego C, Oberhauser C, Posarac A, et al: Measuring disability: comparing the impact of two data collection approaches on disability rates. Int J Environ Res Public Health 2015;12:10329-51
33. World Health Organization, The World Bank: Model Disability Survey (MDS). Available at: http://www.who.int/disabilities/data/mds/en/. Accessed March 24, 2016
34. United Nations: Convention on the Rights of Persons With Disabilities (CRPD). Geneva, United Nations, 2006
35. Itzkovich M, Gelernter I, Biering-Sorensen F, et al: The Spinal Cord Independence Measure (SCIM) version III: reliability and validity in a multi-center international study. Disabil Rehabil 2007;29:1926-33
36. Catz A, Itzkovich M, Tesio L, et al: A multicenter international study on the Spinal Cord Independence Measure, version III: Rasch psychometric validation. Spinal Cord 2007;45:275-91
37. Internationl Spinal Cord Society: International spinal cord injury data sets Activities and Participation BasicData SetData Form.Available at: http://www.iscos.org.uk/sitefiles/2013% 2001%2013-International%20SCI%20Activities%20and%20Participation%20Basic% 20Data%20Set-Variable%20names.pdf. Accessed March 24, 2016
38. Jette AM, Slavin MD, Ni P, et al: Development and initial evaluation of the SCI-FI/AT. J Spinal Cord Med 2015;38:409-18
39. Anderson C, Ballantine E, Bickenbach J, et al: Chapter 8: Education and employmentn, in Bickenbach J, Officer A, Shakespeare T, et al: (eds): International Perspectives on Spinal Cord Injury. Geneva,WHO, 2013, 167-94
40. Post MW, Brinkhof MW, von Elm E, et al: Design of the Swiss Spinal Cord Injury Cohort Study. Am J Phys Med Rehabil 2011;90:S5-16
41. Siegrist J, Starke D, Chandola T, et al: The measurement of effort-reward imbalance at work: European comparisons. Soc Sci Med 2004;58:1483-99
42. WahrendorfM, Blane D,Matthews K, et al: Linking quality of work inmidlife to volunteering during retirement: a European study. J Popul Ageing 2016;9:113-30
43. Ballert CS, Post MW, Brinkhof MW, et al: Psychometric properties of the Nottwil Environmental Factors Inventory Short Form. Arch Phys Med Rehabil 2015;96:233-40
44. Reinhardt JD, Ballert C, Brinkhof MW, et al: Perceived impact of environmental barriers on participation among people living with spinal cord injury in Switzerland. J Rehabil Med 2016;48:210-8
45. Bodine C, Chen Y, Chhabra H, et al: Chapter 4: Health care and rehabilitation needs, in Bickenbach J, Officer A, Shakespeare T, et al: (eds): International Perspectives on Spinal Cord Injury. Geneva,WHO, 2013, 67-91
46. Bodine C, Chen Y, Chhabra H, et al: Chapter 5: Health systems strengthening, in Bickenbach J, Officer A, Shakespeare T, et al: (eds): International on Spinal Cord Injury. Geneva, WHO, 2013, 95-120
47. United Nations Educational, Scientific and Cultural Organization: ISCED 2011 Operational Manual Guidelines for Classifying National Education Programmes and Related Qualifications. Quebec, Canada, UNESCO Institute for Statistics, 2012
48. European Social Survey: Appendix 2. Income, European Social Survey 6-2012 2.0. Available at: https://www.europeansocialsurvey.org/docs/round6/survey/ ESS6-appendix-a2-e02-0.pdf. Accessed March 22, 2016
49. Goodman E, Adler NE, Kawachi I, et al: Adolescents' perceptions of social status: development and evaluation of a new indicator. Pediatrics 2001;108:E31
50. Hagenaars AK, de Vos K, Zaidi MA: Poverty Statistics in the Late 1980s: Research Based On Micor-Data, Luxembourg, Office for Official Publications of the European Communities, 1994
51. Schwarzer R, Jerusalem M: Generalized Self-Efficacy scale, in Weinman J, Wright S, Johnston M (eds): Measures in Health Psychology: A User's portfolio. Causal and control beliefs. Windsor, UK, NFER-NELSON, 1995, 35-7
52. Middleton J, Tate R,Geraghty T: Self-efficacy and spinal cord injury: psychometric properties of a new scale. Rehabil Psychol Health Med 2003;48:281-8
53. Middleton J, Tran Y, CraigA: Relationship between quality of life and self-efficacy in persons with spinal cord injuries. Arch Phys Med Rehabil 2007;88:1643-8
54. Craig A, Tran Y, Siddall P, et al: Developing a model of associations between chronic pain, depressive mood, chronic fatigue, and self-efficacy in people with spinal cord injury. J Pain 2013;14:911-20
55. Peter C, Muller R, Post MW, et al: Psychological resources, appraisals, and coping and their relationship to participation in spinal cord injury: a path analysis. Arch Phys Med Rehabil 2014;95:1662-71
56. Power MJ, Green AM: Development of the WHOQOL disabilities module. Qual Life Res 2010;19:571-84
57. Malone GP, Pillow D, Osman A: The General Belongingness Scale (GBS): assessing achieved belongingness. Pers Individ Dif 2012;52:311-6
58. Geyh S, Fellinghauer BA, Kirchberger I, et al: Cross-cultural validity of four quality of life scales in persons with spinal cord injury. Health Qual Life Outcomes 2010;8:94